New Stage IV Metastasizing Melanoma Husband

NailBitingHusband · March 2010

sadspouse said:
wish you and your wife the best.
My wife as gone done hill. she was dia. 5/2009 and after IL2, DTIC, and now the last thing she is going to try is CARBOPLATIN, and TAXOL. she had her first dose this past thursday and 2 pints of blood yesterday. today she seems just as weak and sick before getting blood. she has been turned down for trial studies because the trial study doctors say she is to weak and physicaly not strong enough to handle them. It has been very hard to watch her go through so much it is very rough, i have been home from work now 5 weeks and have been to every appt. her doctors has been busting his **** off, im glad we got him. through all of this i have learned one thing and that is at first ( I ) wanted to fight the cancer i was the one telling her to fight but i realized that she is the one going through the pain and missory and all i can do his stand by her help her around the house do what ever she needs and keep the doctor advised of everything. i am sorry if i am rambling but i have become very fustrated and sad for my wife she has gone throught alot and has had no good news on anything. She has told me that if the side affects get worse with this chemo that she wants to stop it and call hospis in. I will suport her no matter what she decides. So you stay strong cause it can get rough.

Man, I'm so sorry.
Listen - you've got to keep your spirits up, because it's the main thing you can do for your wife right now. I'm sure its tough as hell, but it's the most important thing you can do right now. I'm so sorry I haven't returned your message till now, but my wife started a clinical trial last week in LA (we live in Washington DC) and we just got back yesterday. If you have the time, try reading the 3 part series of articles that were on the front page of the NY Times last week:

http://www.nytimes.com/2010/02/22/health/research/22trial.html

http://www.nytimes.com/2010/02/23/health/research/23trial.html

http://www.nytimes.com/2010/02/24/health/research/24trial.html?hp

They are about the clinical trial drug my wife is now on, and you will see that one guy on this drug had his life prolonged by one year, and he started it when he had just days left to live.

I'm sorry this is taking such a toll on your wife, but on you, too. I'm in your same situation. I have neglected my job and focused almost 100% on my wife and her condition, and haven't missed any of her doctor appointments, tests, or treatments. What else can we do?

I see myself in your words - try and stay positive. Best of luck to you. Feel free to contact me anytime.

Mike
michael.c.stratos@gmail.com

GinSue · March 2010

NailBitingHusband said:
Started RO5185426 / PLX4026 in March 2009
Hi GinSue,

Sorry for the delay in getting back to you, but we just got back from the initial treatment at UCLA for the new Phase I trial for this B-RAF positive drug. My wife seems to be responding well so far - no side-effects whatsoever. This is a phase I trial for the same Roche drug, but it includes taking some everyday drugs, too, to see how it would react in patients under "normal" situations.

I'm glad to hear that your tumors have reduced in size, and that no further spread has occurred. I've been researching the "next" step, should PLX14026 stop working. It appears that those who are B-RAF positive likely also have the MEK mutation, so I am seeking our MEK options. UCLA has set up a MEK option for those that do drop out of the B-RAF drug. The MEK drug is made by GSK (Glaxo Smith Klien).

I've also had my wife's tissue submitted for genome sequencing so that we can know what her specific mutations are - I think it would be much better knowing which drug inhibitors to focus on rather than to be constantly guessing and taking unnecessary tests.

We were offered a slot for the Phase III trial in Dallas, but decided that the Phase I for the same drug was a better option since all of it's patients got the trial drug (only 50% of Phase III patients get the trial drug, the rest get chemo). I'm glad you're in the Phase II trial - that one, too, guaranteed you got the trial drug.

I'll let you know how things progress. Please stay in touch.

Best of luck to you!

Mike
Michael.C.Stratos@gmail.com

That's Wonderful!!
Hey Mike! Thanks for the update on you and your wife. I was a little worried since it had been a while since your last post. I appreciate your info on the steps you are taking next. I will check into that as well. I am glad you went with the Phase 1 trial and definitely got on the drug. I'm pleased to know they are testing it with other meds since there is a page full of meds I can not take while in the trial. Please give your wife a big hug from me and tell her to stay positive and accept all the support she can get from family and friends. It has a done a world of good for me! And it sounds like she has an excellent caregiver as well. You are to be commended! I promise to keep in touch and ask you to do the same. I would like to know how your wife progresses on the trial. It is certainly a very promising drug.

Keep the good news coming!

Ginger

NailBitingHusband · March 2010

NailBitingHusband said:
Man, I'm so sorry.
Listen - you've got to keep your spirits up, because it's the main thing you can do for your wife right now. I'm sure its tough as hell, but it's the most important thing you can do right now. I'm so sorry I haven't returned your message till now, but my wife started a clinical trial last week in LA (we live in Washington DC) and we just got back yesterday. If you have the time, try reading the 3 part series of articles that were on the front page of the NY Times last week:

http://www.nytimes.com/2010/02/22/health/research/22trial.html

http://www.nytimes.com/2010/02/23/health/research/23trial.html

http://www.nytimes.com/2010/02/24/health/research/24trial.html?hp

They are about the clinical trial drug my wife is now on, and you will see that one guy on this drug had his life prolonged by one year, and he started it when he had just days left to live.

I'm sorry this is taking such a toll on your wife, but on you, too. I'm in your same situation. I have neglected my job and focused almost 100% on my wife and her condition, and haven't missed any of her doctor appointments, tests, or treatments. What else can we do?

I see myself in your words - try and stay positive. Best of luck to you. Feel free to contact me anytime.

Mike
michael.c.stratos@gmail.com

Plan B in case PLX4032 doesn't work
I've been speaking to various doc about what to do if/when the B-RAF gene konks out and the "driving" gene rotates to the next "driver" mutation. Appears that those with a B-RAF gene mutation are likely to rotate to the MEK mutation. There are several hospitals starting MEK mutation drug trials, so keep an eye out for them.

Always good to have something in your hip pocket.

M

sfrey · March 2010

NailBitingHusband said:
Plan B in case PLX4032 doesn't work
I've been speaking to various doc about what to do if/when the B-RAF gene konks out and the "driving" gene rotates to the next "driver" mutation. Appears that those with a B-RAF gene mutation are likely to rotate to the MEK mutation. There are several hospitals starting MEK mutation drug trials, so keep an eye out for them.

Always good to have something in your hip pocket.

M

Stage 4 melanoma
Hi,

I just read your posts. My brother in law was diagnosed with stage 4 melanoma Nov 2009, it is on his spine, sternum, pelvis, liver. He recently did the interleukin in Jan2010, but just reviewed the scans last week, and there were more tumors...so treatment did not work. He has now started chemo with Taxol and Carboplatin (1 dose completed), so we are awaiting to see if this will affect the cancer.
In the meantime I am reading these article of the Dr Flaherty in Pennsylvania for the PLX drug. His oncologist told him he could have his gene tested but would take a month or longer to send out of state....seems like everything takes time. I agree with you that you should have your gene tested so your Dr is not guessing with your treatment and can focus on what may work for your type.
I am trying to be proactive and research for him, but my sister does not take my advice as I want...she says that the dr knows what he is doing and they are at the best place. (I was not telling them to travel states, but just to be open to searching over peoples stories and what their course of action is/was).
I am frustrated as I am only trying to help, but sometimes my advice is not always heard.
If you would like to offer any thoughts/suggestions I am always open.
Thanks for reading (1st time to post on this site).
Sarah~

JR1949 · March 2010

NailBitingHusband said:
Man, I'm so sorry.
Listen - you've got to keep your spirits up, because it's the main thing you can do for your wife right now. I'm sure its tough as hell, but it's the most important thing you can do right now. I'm so sorry I haven't returned your message till now, but my wife started a clinical trial last week in LA (we live in Washington DC) and we just got back yesterday. If you have the time, try reading the 3 part series of articles that were on the front page of the NY Times last week:

http://www.nytimes.com/2010/02/22/health/research/22trial.html

http://www.nytimes.com/2010/02/23/health/research/23trial.html

http://www.nytimes.com/2010/02/24/health/research/24trial.html?hp

They are about the clinical trial drug my wife is now on, and you will see that one guy on this drug had his life prolonged by one year, and he started it when he had just days left to live.

I'm sorry this is taking such a toll on your wife, but on you, too. I'm in your same situation. I have neglected my job and focused almost 100% on my wife and her condition, and haven't missed any of her doctor appointments, tests, or treatments. What else can we do?

I see myself in your words - try and stay positive. Best of luck to you. Feel free to contact me anytime.

Mike
michael.c.stratos@gmail.com

We Got Good Test Results
I'm sorry that I have not got back to you. My last post to you was in January, I have thought about you and I have prayed for all of my friends on this cancer survivors network.
Like you said, you have to keep positive and I know sometimes that's hard to do.

I told you that my wife was scheduled to go back to the hospital in February but it was postponed. Her doctor wanted to have another PET scan and CT scan since last CT scan was done December 29. So they did a PET and CT scan March 5 and we got the results Monday. Praise God, the scans showed that the tumors were gone!!!

I wish the best of luck for your wife. I believe in the power of prayer....we had friends and family praying for us. I will pray for your wife's recovery.

JR1949

NailBitingHusband · March 2010

sfrey said:
Stage 4 melanoma
Hi,

I just read your posts. My brother in law was diagnosed with stage 4 melanoma Nov 2009, it is on his spine, sternum, pelvis, liver. He recently did the interleukin in Jan2010, but just reviewed the scans last week, and there were more tumors...so treatment did not work. He has now started chemo with Taxol and Carboplatin (1 dose completed), so we are awaiting to see if this will affect the cancer.
In the meantime I am reading these article of the Dr Flaherty in Pennsylvania for the PLX drug. His oncologist told him he could have his gene tested but would take a month or longer to send out of state....seems like everything takes time. I agree with you that you should have your gene tested so your Dr is not guessing with your treatment and can focus on what may work for your type.
I am trying to be proactive and research for him, but my sister does not take my advice as I want...she says that the dr knows what he is doing and they are at the best place. (I was not telling them to travel states, but just to be open to searching over peoples stories and what their course of action is/was).
I am frustrated as I am only trying to help, but sometimes my advice is not always heard.
If you would like to offer any thoughts/suggestions I am always open.
Thanks for reading (1st time to post on this site).
Sarah~

Cheryl's PLX4032 / RO5185426 update
Cheryl has it in her lung, a lung lymph node, 2 places in the liver & a liver lymph node. She too was diagnosed Nov 09, and though they can't find cancer in her uterus, they found cancer cell there and in her right breast. Cheryl is 45, and no external "primary" was ever detected. They're speculating it originated in her lung.

Anyway, she started PLX4032 (now called RO5185426) on Feb 28. It took 2 weeks to confirm that she had the B-Raf gene mutation and (this is new) the right liver DNA (10% don't). Roche has to confirm results using their own labs. This study required her to be on cocktail of drugs for another 6 days too before she started PLX. Add in the initial doc appointment, lag and travel - that's an additional 1-2 weeks on top of the above referenced tests.

Up until yesterday the only side affect were some headaches, but yesterday she broke out in a bad rash all over her body. The rash caused tenderness and itching too, plus fatigue and other flu like symptoms. She is feeling better today though still has the rash. Doctor said the rash commonly starts between days 10 & 30. Joint pain, too. Spoke with a woman taking the drug in Dallas these last 4.5 months ans she has had a milder rash almost the entire time. Our doc says the rash is evidence the drug is working. Doc has also said some people get thinning hair, but she's not seen that.

I'm aware of several sites testing the drug : NYC, Boston, Dallas, Nashville, Philly, & LA. Though we live in DC, she is in the LA trial. There are now only Phase ii and Phase iii trials out there. Go to www.clinicaltrials.gov to check for locations best for you. Your brother in law should focus on the Phase ii because he will 100% get the drug (and its specifically for people who have tried and failed other treatments). Anyway, lead in time no big deal because previously treated people need to wait 30 days without mess before they can start anyway.

I heard that Ippilumimab is re-entering mkt. Very promising/was most promising before PLX made its splash. You should check into that, too.

NailBitingHusband · March 2010

JR1949 said:
We Got Good Test Results
I'm sorry that I have not got back to you. My last post to you was in January, I have thought about you and I have prayed for all of my friends on this cancer survivors network.
Like you said, you have to keep positive and I know sometimes that's hard to do.

I told you that my wife was scheduled to go back to the hospital in February but it was postponed. Her doctor wanted to have another PET scan and CT scan since last CT scan was done December 29. So they did a PET and CT scan March 5 and we got the results Monday. Praise God, the scans showed that the tumors were gone!!!

I wish the best of luck for your wife. I believe in the power of prayer....we had friends and family praying for us. I will pray for your wife's recovery.

JR1949

Wow!
That is the best news I've heard in months! I am so happy for your wife and for you!

We're plugging along at UCLA. My wife is getting over a severe and painful rash, and joint pain (PLX's side affects), and she's starting to look and feel normal again. We head back to the East Coast on a red-eye Monday night. Just spoke to my son - he's working on a school project that depicts George Washington crossing the Delaware. I feel like a schmuck for not being there, and I keep telling myself I can't be in 2 places at once, but that doesn't help. Sucks. We go home on a red-eye Monday night.

I'll go and tell my wife your good news. That should bring up her spirits. You hang in there!

BlakeA · March 2010

NailBitingHusband said:
Wow!
That is the best news I've heard in months! I am so happy for your wife and for you!

We're plugging along at UCLA. My wife is getting over a severe and painful rash, and joint pain (PLX's side affects), and she's starting to look and feel normal again. We head back to the East Coast on a red-eye Monday night. Just spoke to my son - he's working on a school project that depicts George Washington crossing the Delaware. I feel like a schmuck for not being there, and I keep telling myself I can't be in 2 places at once, but that doesn't help. Sucks. We go home on a red-eye Monday night.

I'll go and tell my wife your good news. That should bring up her spirits. You hang in there!

Reading your stories is inspiring.

My wife is 36 years old. She had a mole removed from her forearm in 2006 that tested positive for melanoma. Her scans later showed nothing had spread. In September 2009, she discovered her entire underarm area was swollen. they did several surgeries, removing alot of infected lypmh nodes. My wife is now stage 4 and has gone through Chemo, Radiation, and hormonal therapies. We also just delivered a baby boy in December 2009 and the melanoma crossed the placenta. The doctors are hopeful his immune system killed the cells. Time will tell.

We were referred to Dr. Steven O'day in Santa Monica last week. He tested her for BRAF and HLA typing. He said we have a 50% chance at being positive for those clinical trials. The other trial he said is starting in April at John Wayne Cancer Center is the Ipilmumab drug. I think he called it a compasionate study meaning they are close to FDA approval but still want to offer the drug.

My wife has a spot on her spleen, and in several lymph nodes in her abdomonal area. Also one nodule in her back/hip area above the belt. Her MRI CT and PET scans didnt show anything in the lung, liver or brain.

Dr. O'Day said these clinical trials are doing great things. He also said if we can get these drugs to work, we can prepare for the next round of new trial drugs upcoming. We are hopeful. He also said typical life expectancy statistics are different because of the newer drugs that are being offered.

I am glad I found this message board. Feel free to reach out if you would like to share your story or chat.

blakeinchina@yahoo.com

I spoke to "NailbitingHusband" and his wife earlier on the phone. Was good to chat with both of you. I know what you are going through. Keep in touch.

GinSue · March 2010

BlakeA said:
Reading your stories is inspiring.

My wife is 36 years old. She had a mole removed from her forearm in 2006 that tested positive for melanoma. Her scans later showed nothing had spread. In September 2009, she discovered her entire underarm area was swollen. they did several surgeries, removing alot of infected lypmh nodes. My wife is now stage 4 and has gone through Chemo, Radiation, and hormonal therapies. We also just delivered a baby boy in December 2009 and the melanoma crossed the placenta. The doctors are hopeful his immune system killed the cells. Time will tell.

We were referred to Dr. Steven O'day in Santa Monica last week. He tested her for BRAF and HLA typing. He said we have a 50% chance at being positive for those clinical trials. The other trial he said is starting in April at John Wayne Cancer Center is the Ipilmumab drug. I think he called it a compasionate study meaning they are close to FDA approval but still want to offer the drug.

My wife has a spot on her spleen, and in several lymph nodes in her abdomonal area. Also one nodule in her back/hip area above the belt. Her MRI CT and PET scans didnt show anything in the lung, liver or brain.

Dr. O'Day said these clinical trials are doing great things. He also said if we can get these drugs to work, we can prepare for the next round of new trial drugs upcoming. We are hopeful. He also said typical life expectancy statistics are different because of the newer drugs that are being offered.

I am glad I found this message board. Feel free to reach out if you would like to share your story or chat.

blakeinchina@yahoo.com

I spoke to "NailbitingHusband" and his wife earlier on the phone. Was good to chat with both of you. I know what you are going through. Keep in touch.

CT Scans this week
I am glad to hear such promising news from everyone in the last few posts!

My husband and I are leaving for Dallas, Texas tomorrow for my 6 week scans. Please pray that all continues to be at least stable for me although I am certainly praying for more shrinkage of the existing tumors! It continues to be a scary time especially when scan visits roll around!

This drug is providing a new ray of hope where none really existed as little as a year or two ago. I feel so blessed to be able to take part in such a miraculous study and receive the benefit of an extended life expectancy!

I am 43 and was diagnosed Stage IIIC in September 2007 - a mole that changed on top of my foot. Although it has not spread to any major organs or to my brain, the distance of the spread has moved me to Stage IV.

Many blessings to all of you and as stated earlier, please don't hesitate to contact me. If sharing my experiences with any of you will help, I want to be there for you!

ginellis@ec.rr.com

lkoepplin · March 2010

BlakeA said:
Reading your stories is inspiring.

My wife is 36 years old. She had a mole removed from her forearm in 2006 that tested positive for melanoma. Her scans later showed nothing had spread. In September 2009, she discovered her entire underarm area was swollen. they did several surgeries, removing alot of infected lypmh nodes. My wife is now stage 4 and has gone through Chemo, Radiation, and hormonal therapies. We also just delivered a baby boy in December 2009 and the melanoma crossed the placenta. The doctors are hopeful his immune system killed the cells. Time will tell.

We were referred to Dr. Steven O'day in Santa Monica last week. He tested her for BRAF and HLA typing. He said we have a 50% chance at being positive for those clinical trials. The other trial he said is starting in April at John Wayne Cancer Center is the Ipilmumab drug. I think he called it a compasionate study meaning they are close to FDA approval but still want to offer the drug.

My wife has a spot on her spleen, and in several lymph nodes in her abdomonal area. Also one nodule in her back/hip area above the belt. Her MRI CT and PET scans didnt show anything in the lung, liver or brain.

Dr. O'Day said these clinical trials are doing great things. He also said if we can get these drugs to work, we can prepare for the next round of new trial drugs upcoming. We are hopeful. He also said typical life expectancy statistics are different because of the newer drugs that are being offered.

I am glad I found this message board. Feel free to reach out if you would like to share your story or chat.

blakeinchina@yahoo.com

I spoke to "NailbitingHusband" and his wife earlier on the phone. Was good to chat with both of you. I know what you are going through. Keep in touch.

im not alone in this boat.
I am newly diagnosed 34 year old woman, stage IV metastatic melanoma.

I was first diagnosed with melanoma in Nov 2007. My mole was colorless, .95 mm thick with a Clark level 4. After a wide excision removal w/sentinel node biopsy they did a PET scan and said I was clear. For the first year I went for 3 mo checkups, after that every 6 mos. I AM EXTREMELY VIGILANT and aware of my skin, as I have been getting basal cell/squamous cell carcinoma's since my early 20's.

Last month (FEB 2010) I found numerous nodules in several places of my body, a swollen lymph node as well as a lump in my right breast. These all came about over the span of one week. I got into the doctor immediately. They did a core biopsy of my breast and found melanoma, then verified the nodules (tumors) were also melanoma. After doing my CT/PET scan, I went in for the results of the report. The report stated that I had "hot spots" on both femurs, hip, ribcage, spine, liver and lung. My local doctors got me an appt with UCSF that following week. Last week I saw Dr. Daud and Dr. Algazi (love them both) who went over the actual PET images with my family and I, to see that the report was VERY inaccurate. I have one area in my spine, something on my lung which they think might be a lymph node and multiple nodules/tumors (not ulcerated)on my skin. They tested me for the BRAF gene and I should receive the results next tuesday.

Once I know my results of the BRAF test, we will decide on a plan of attack.

I am scared to death. My husband is scared, but totally my ROCK. We have both lost mothers to cancer (lymphoma and myeloma)and will do whatever it takes. Waiting is hard, so we try to be proactive by doing research. I search high and low for the good news, whilst sifting through the grim.

My heart is with you ALL. I now feel like I have found others in the same boat, on the same road......whatever.

I will be checking/updating this forum frequently. Please feel free to message me for ANYTHING.

Laura

notcopingwell · March 2010

Metastasized Melanoma
On the 3rd of this month my husband was having problems with his left arm and leg. I took him to the emergency room where they did a ct scan and found an orange sized tumor in his brain. He was sent home with an appointment for an mri the next day. After his mri he was admitted to the hospital. By the end of the day he was paralyzed on his left side. On the 8th the neurosurgeon was able to remove all of the tumor. Most of his left thumb was also removed (it had a chronic wound in the nail bed). Pathology reported the tumor in his brain was melanoma that originated in his thumb. Two days after the tumor was removed he started getting feeling back in his left side. He is able to walk now but his vision is blurry and has double vision. They did another ct scan and there maybe some melanoma in the lymph nodes near his lungs. He just started radiation yesterday. We are still kinda left in the dark about what the next step is. We see an oncologist next week that deals with chemo. Can someone give me a clue of what my husband's and my future will be like for the next few weeks/months?

jenwms78 · March 2010

JR1949 said:
My wife is stage IV metastic melanoma
Hello,
My wife had a malignant mole on her forehead that was melanoma April 1991. The mole and boundaries were excised along with lymph nodes on that side. She faithfully returned for all scheduled followup visits since 1991 and was cancer free until June 2009. The dark spot on the xray was diagnosed after CT scan, PET scan, MRI and biopsy as stage IV recurrent melanoma with a tumor on her esophagus and 2 on her lung. Her oncologist told us the best treatment was IL2 (Interleuken 2) and there was a 20% chance that she would respond. However he told us that he had patients who had been 5 - 10 - 15 years cancer free. IL2 is a very agressive chemotherapy, it has side effects of hausea and vomiting, extremely itchy skin, body aches like you have the flu, thinning hair, shakes like you are in a refrigerator and hot flashes. I've told you the bad part, the good part is that after two courses of treatment (2 weeks in August, 2 weeks in November) my wife's two CT scans revealed very significant reduction (over 50% each time) of 2 tumors and removal of third one. She is scheduled for another course of treatment in February. You may want to ask your oncologist about the Interleuken 2 chemo. We believe in it.

Keep a positive attitude and pray because that is what got us through our journey. This CSN bulletin board is also a great resource for information and support.

JR

My name is Jennifer Williams
My name is Jennifer Williams I'm a 32yr old mother of four, was diagnos
with Malignant Mellanoma also stage 4. Just wanted you to know reading your
story gives me a lot of more hope and comfort. thank you for sharing. I have surgery on the 8th of april at Vanderbilt and will know the treatment plan after that. wishing wellness and a good healthy life.

ScotsIrishSurvivor · March 2010

notcopingwell said:
Metastasized Melanoma
On the 3rd of this month my husband was having problems with his left arm and leg. I took him to the emergency room where they did a ct scan and found an orange sized tumor in his brain. He was sent home with an appointment for an mri the next day. After his mri he was admitted to the hospital. By the end of the day he was paralyzed on his left side. On the 8th the neurosurgeon was able to remove all of the tumor. Most of his left thumb was also removed (it had a chronic wound in the nail bed). Pathology reported the tumor in his brain was melanoma that originated in his thumb. Two days after the tumor was removed he started getting feeling back in his left side. He is able to walk now but his vision is blurry and has double vision. They did another ct scan and there maybe some melanoma in the lymph nodes near his lungs. He just started radiation yesterday. We are still kinda left in the dark about what the next step is. We see an oncologist next week that deals with chemo. Can someone give me a clue of what my husband's and my future will be like for the next few weeks/months?

Another Melanoma Story
I'm a 46 year old woman that was diagnosed with a rare melanoma in 2005. In early February, I had an xray taken of what we thought was a possible fracture and discovered it was a bone tumor. Having no insurance, I was referred to one of the state funded hospitals and a bone biopsy confirmed that the previous melanoma had metastasized after 5 years. I have lumps on my shoulder that have not been biopsied. No further testing is scheduled until after Easter.

After reading all the above entries and seeing how quickly most of the cases were handled, I am left wondering if lack of insurance (which I lost this past August) is the catalyst that will kill me before the melanoma will be completely diagnosed! ? !
We have been turned down for financial aid because we have a home, a car and a small retirement fund. That IRA would not even cover the surgical biopsy bill !
Very sad and depressed over this situation and praying that others do not get treated like this.

My prayers also, to all that posted here before me.
Every bit of info and support helps.

JR1949 · April 2010

ScotsIrishSurvivor said:
Another Melanoma Story
I'm a 46 year old woman that was diagnosed with a rare melanoma in 2005. In early February, I had an xray taken of what we thought was a possible fracture and discovered it was a bone tumor. Having no insurance, I was referred to one of the state funded hospitals and a bone biopsy confirmed that the previous melanoma had metastasized after 5 years. I have lumps on my shoulder that have not been biopsied. No further testing is scheduled until after Easter.

After reading all the above entries and seeing how quickly most of the cases were handled, I am left wondering if lack of insurance (which I lost this past August) is the catalyst that will kill me before the melanoma will be completely diagnosed! ? !
We have been turned down for financial aid because we have a home, a car and a small retirement fund. That IRA would not even cover the surgical biopsy bill !
Very sad and depressed over this situation and praying that others do not get treated like this.

My prayers also, to all that posted here before me.
Every bit of info and support helps.

Melanoma
I will be praying for you and offer any support I can.
Have you talked to the hospital about financial help or a payment plan? My heart goes out to you. I know it's hard to do but try to stay positive and pray. I know prayers are answered. I had prostate cancer last year and am cancer free now and my wife had stage 4 melanoma June 2009 and March 5, 2010 PET and CT scans showed no hot spots and cancer free.
Feel free to see my story on My CSN space by clicking on the blue box with JR1949.

NailBitingHusband · April 2010

jenwms78 said:
My name is Jennifer Williams
My name is Jennifer Williams I'm a 32yr old mother of four, was diagnos
with Malignant Mellanoma also stage 4. Just wanted you to know reading your
story gives me a lot of more hope and comfort. thank you for sharing. I have surgery on the 8th of april at Vanderbilt and will know the treatment plan after that. wishing wellness and a good healthy life.

I hope all went well today!
Jennifer,

I assume you are seeing Dr. Sosman there at Vanderbilt - I've heard some very nice things about him, and my wife almost pulled the trigger on seeking treatment at Vanderbilt, but decided that UCLA was a better fit for her. Keep your chin up and be as positive as you can!

My best to your family.

Mike

NailBitingHusband · April 2010

notcopingwell said:
Metastasized Melanoma
On the 3rd of this month my husband was having problems with his left arm and leg. I took him to the emergency room where they did a ct scan and found an orange sized tumor in his brain. He was sent home with an appointment for an mri the next day. After his mri he was admitted to the hospital. By the end of the day he was paralyzed on his left side. On the 8th the neurosurgeon was able to remove all of the tumor. Most of his left thumb was also removed (it had a chronic wound in the nail bed). Pathology reported the tumor in his brain was melanoma that originated in his thumb. Two days after the tumor was removed he started getting feeling back in his left side. He is able to walk now but his vision is blurry and has double vision. They did another ct scan and there maybe some melanoma in the lymph nodes near his lungs. He just started radiation yesterday. We are still kinda left in the dark about what the next step is. We see an oncologist next week that deals with chemo. Can someone give me a clue of what my husband's and my future will be like for the next few weeks/months?

Hang in there!
What options did your doctor give your you guys? Choosing the right doctor and the strategy that makes the most sense for you / your husband is key, and the only way to do any of this is to research this yourself. Melanoma was been a wasteland for so long for doctors - there had been little to no advancement in treatment until only just recently. As a result, chosing melanoma as specialty was a dead-end for doctors. Now there is a lot of excitement in the field because of new discoveries. You've got to be aware, though, that most of these specialist are "clinicians", more research doctors than you're used to. That means that their bedside manner sucks, and they think outloud too much. Don't let that get you down. Another thing - these doctors are commited to specific philosophies. What I mean is that many of these doctors will not likely recommend strategies outside their area of expertise. That's why some doctors and hospitals never have clinical trials on treatments "opposed" to their philosophy (ie: an IL2 doctor likely wouldn't recommend ippi or what I call "genome-oriented" treatments like PLX4032). This is why your own research is absolutely necessary.

It amazes me how uninformed we have all been about melanoma. We're told to watch for moles, moles, moles. And since my wife contracted melanoma (the doctors believe it originated / is a lung primary), I've heard so many stories about it NOT starting on the skin, but on an organ in the body, somewhere on genitalia, in the brain, in the eye and bones. Now you're saying your husband's started on his thumb? Whenever someone hears my wife has melanoma, they ask "where is the mole" and assume it's one of those cancers that's "not a big deal". Doctors and associations associated with melanoma are not, IN MY OPINION, doing a good enough job informing the public about melanoma. Something has to be done!

M

NailBitingHusband · April 2010

ScotsIrishSurvivor said:
Another Melanoma Story
I'm a 46 year old woman that was diagnosed with a rare melanoma in 2005. In early February, I had an xray taken of what we thought was a possible fracture and discovered it was a bone tumor. Having no insurance, I was referred to one of the state funded hospitals and a bone biopsy confirmed that the previous melanoma had metastasized after 5 years. I have lumps on my shoulder that have not been biopsied. No further testing is scheduled until after Easter.

After reading all the above entries and seeing how quickly most of the cases were handled, I am left wondering if lack of insurance (which I lost this past August) is the catalyst that will kill me before the melanoma will be completely diagnosed! ? !
We have been turned down for financial aid because we have a home, a car and a small retirement fund. That IRA would not even cover the surgical biopsy bill !
Very sad and depressed over this situation and praying that others do not get treated like this.

My prayers also, to all that posted here before me.
Every bit of info and support helps.

Support
Don't get down - there are options out there. Have you contacted the various support groups out there? Here is a link to a bunch of them, including one's that provide financial support, that I found at the National Cancer Institute's support group site:

https://cissecure.nci.nih.gov/factsheet/FactsheetSearchResult8_1.aspx?~UHViTG5rPTguMSZDYW5jZXJUeXBlPTk=-VJgOelWdve4=

and here is a link to the American Cancer Society's support group site:

http://www.cancer.org/docroot/ESN/ESN_1.asp

You're not alone. Unfortunately, it seems that the Melanoma "group" is getting crowded.

surface1969 · April 2010

NailBitingHusband said:
Hang in there!
What options did your doctor give your you guys? Choosing the right doctor and the strategy that makes the most sense for you / your husband is key, and the only way to do any of this is to research this yourself. Melanoma was been a wasteland for so long for doctors - there had been little to no advancement in treatment until only just recently. As a result, chosing melanoma as specialty was a dead-end for doctors. Now there is a lot of excitement in the field because of new discoveries. You've got to be aware, though, that most of these specialist are "clinicians", more research doctors than you're used to. That means that their bedside manner sucks, and they think outloud too much. Don't let that get you down. Another thing - these doctors are commited to specific philosophies. What I mean is that many of these doctors will not likely recommend strategies outside their area of expertise. That's why some doctors and hospitals never have clinical trials on treatments "opposed" to their philosophy (ie: an IL2 doctor likely wouldn't recommend ippi or what I call "genome-oriented" treatments like PLX4032). This is why your own research is absolutely necessary.

It amazes me how uninformed we have all been about melanoma. We're told to watch for moles, moles, moles. And since my wife contracted melanoma (the doctors believe it originated / is a lung primary), I've heard so many stories about it NOT starting on the skin, but on an organ in the body, somewhere on genitalia, in the brain, in the eye and bones. Now you're saying your husband's started on his thumb? Whenever someone hears my wife has melanoma, they ask "where is the mole" and assume it's one of those cancers that's "not a big deal". Doctors and associations associated with melanoma are not, IN MY OPINION, doing a good enough job informing the public about melanoma. Something has to be done!

M

I had melanoma
I have just joined and spent the last few minutes reading through the posts and am curious why none of you have tried Interleukin 2? I was diagnosed with melanoma in 2003 and it eventually with to my spine and lungs. My oncologist immediately sent me to The National Institutes of Health in Bethesda, MD. I began the IL2 treatments and they worked on me... thank GOD!! I'm cancer free today (or NED - no evidence of disease). So, I'm just curious if any of you looked in to this treatment.

Thanks!

GinSue · April 2010

surface1969 said:
I had melanoma
I have just joined and spent the last few minutes reading through the posts and am curious why none of you have tried Interleukin 2? I was diagnosed with melanoma in 2003 and it eventually with to my spine and lungs. My oncologist immediately sent me to The National Institutes of Health in Bethesda, MD. I began the IL2 treatments and they worked on me... thank GOD!! I'm cancer free today (or NED - no evidence of disease). So, I'm just curious if any of you looked in to this treatment.

Thanks!

I did try IL-2
I have gone thru several surgeries and therapies. Here is my list from the beginning:

1) Wide Margin Excision w/skin graft on right foot and Sentinel Lymph Node - Sept 2007
2) Superficial and deep lymph node removal right groin (2 separate surgeries)- Oct 2007
3) Interferon - Dec 2007 thru Jan 2008 (did not do home inj. on Dr. advice)
4) Isolated Limb Infusion due to development of in-transit disease right thigh (considered recurrence) - May 2008
5) Interleukin 2 (IL-2) - June 2008 thru Feb 2009
6) Lymph nodes removed under right arm due to recurrence found in June 2009 - July 2009
7) In-transit disease right breast, new activity with right groin in-transit, multiple internal tumors found on PET (surgery not reommended due to number of tumors and new activity) however, no major organ involvement - Sept 2009
8) Participation in Roche BRAF trial Dallas TX - Nov 2009 to present

I have to say that I believe that my in-transit disease is the culprit in my case. The limb infusion, which was a lethal amount of chemo, could not reach all the tumors which had spread from my groin to my hip and buttocks area. This technique uses a turniquet to isolate the treated area which prevents the chemo from reaching organs. You can google it if you have more questions. I know IL-2 has worked for many people and in my case, it did delay recurrence for about 6 months. If it is an option for anyone, I do encourage this treatment. It is very very rigorous but is doable and worth the effort!

Ginger
ginellis@ec.rr.com

ScotsIrishSurvivor · April 2010

NailBitingHusband said:
Support
Don't get down - there are options out there. Have you contacted the various support groups out there? Here is a link to a bunch of them, including one's that provide financial support, that I found at the National Cancer Institute's support group site:

https://cissecure.nci.nih.gov/factsheet/FactsheetSearchResult8_1.aspx?~UHViTG5rPTguMSZDYW5jZXJUeXBlPTk=-VJgOelWdve4=

and here is a link to the American Cancer Society's support group site:

http://www.cancer.org/docroot/ESN/ESN_1.asp

You're not alone. Unfortunately, it seems that the Melanoma "group" is getting crowded.

Small Update
Thanks for the above links and emotional support! I've been in contact with the local ACS and also, we are still currently on a self pay status. Very difficult with one income that can be seasonal.
I was informed this week (after petscan) that the melanoma has metastasized to my lymphnodes and liver... tentative surgeries and chemo/radiation to follow in the next few weeks.
Any advice and support is greatly appreciated. I'm determined to fight this thing, even with the financial difficulties slowing the process!
Hoping that this 'group' declines in numbers on diagnosis but NOT survivors!
My prayers to all, fighting and supporting!

New Stage IV Metastasizing Melanoma Husband

Comments

Discussion Boards